Good News and Puzzling News
I met with the neurosurgeon and his resident today. The fact that I had the appointment meant that they'd reviewed my MRIs and found something significant enough to warrant their attention.
The good news? The Chiari malformation, diagnosed in 2009, has not changed at all in three years time. Yes, it causes me problems, and those issues *could* be a problem, but the current pain is more likely caused by the compression of C5-6 in my spine.
The doctor described what is going on in my neck as 'ugly', and I would say that is a most apt description.
That circle in the center of the image is my spinal cord. To the left, the white 'arm' you see is part of the spine, and you should see another one on the right side, hence calling it ugly!
However, some of the symptoms I have indicate problems lower in the cervical spine, and they are the reverse of where they should be, so this means I had to get some xrays, need to repeat the lovely EMG and nerve conduction study I did three years ago. He wants to be sure of what is going on in there before he decides how much repair work is needed.
Looking at my medical history, he asked me about my blood thinners, and was surprised that I'm not on them after a DVT and several vein stripping surgeries. I explained that Dr. J told me I've used all my strikes and I go to Heparin if there is another clot. He nodded at my theory that the reason I am not on them is that Coumadin and I do not work well together, and that's usually the drug of choice for people with Factor V Leiden. As with everything else, I have be be the problem patient.
The thing that I didn't catch until later is that at one point, he said to me "I don't know how you function." and I let it pass at the time. Having time to review the appointment afterwards, I think he was talking about the fact that I'm in a lot of pain constantly and I just am so damn matter of fact about it.
I really wish I wasn't. I would love to be pain-free, but I can't remember what that is like anymore. At this point, getting rid of the worst of it would be good, but realistically, there still will be several things nagging me day in and day out. I'll just be happy with reducing the 7 and 8 pain days to 2s and 3s.
Is that too much to expect?
The good news? The Chiari malformation, diagnosed in 2009, has not changed at all in three years time. Yes, it causes me problems, and those issues *could* be a problem, but the current pain is more likely caused by the compression of C5-6 in my spine.
The doctor described what is going on in my neck as 'ugly', and I would say that is a most apt description.
However, some of the symptoms I have indicate problems lower in the cervical spine, and they are the reverse of where they should be, so this means I had to get some xrays, need to repeat the lovely EMG and nerve conduction study I did three years ago. He wants to be sure of what is going on in there before he decides how much repair work is needed.
Looking at my medical history, he asked me about my blood thinners, and was surprised that I'm not on them after a DVT and several vein stripping surgeries. I explained that Dr. J told me I've used all my strikes and I go to Heparin if there is another clot. He nodded at my theory that the reason I am not on them is that Coumadin and I do not work well together, and that's usually the drug of choice for people with Factor V Leiden. As with everything else, I have be be the problem patient.
The thing that I didn't catch until later is that at one point, he said to me "I don't know how you function." and I let it pass at the time. Having time to review the appointment afterwards, I think he was talking about the fact that I'm in a lot of pain constantly and I just am so damn matter of fact about it.
I really wish I wasn't. I would love to be pain-free, but I can't remember what that is like anymore. At this point, getting rid of the worst of it would be good, but realistically, there still will be several things nagging me day in and day out. I'll just be happy with reducing the 7 and 8 pain days to 2s and 3s.
Is that too much to expect?
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